Category bence jones

March round-up 2013


March started much as February had ended, the first couple of weeks I was extremely busy at work and in addition I was in the happy position of having two exhibitions to prepare for in Istanbul: one at the Kasa Gallery, Body of Evidence and No Detectable Level at the online space the Museum of Contemporary Cuts. I must thank the curatorial teams involved in selecting, organising and conceptualising these shows, they worked extremely hard and came up with some great solutions at incredibly short notice. Take a bow Lanfranco Aceti, Vince Dziekan, Ozden Sahin and Jonathan Munro.

I promised myself I would try to be more creative this month and I managed to do some drawings documenting my chemo. Images from the shows and the drawings can be seen here. I also managed to write a submit a paper. I suspect some of the energy to do this work is derived from steroids. More of which later. I also had an MRI scan at Mount Vernon to check the progress of the lesions that they had initially spotted before xmas.

My monthly specialist meeting  at UCLH proved interesting. As you are looked after by a ‘multidisciplinary team’ you’re never quite sure who you are going to see and you tend to get different kinds of information from different specialists. Anyhow, I am officially an ‘interesting case’ because of the lack of markers in my testing. This is not necessarily a bad thing, in fact it might be a good thing, as my prognosis might be slightly better. I also found out that I would definitely be having at least one, if not two more cycles of chemo. This pushes the stem cell transplant back to around May time. I took the news stoically.

In terms of side-effects things trundled along pretty much as before, initially anyhow. Some tiredness, the occasional bout of mild nausea. I have whacked on a load of weight though and this is due to the steroid Dexamethasone which I have to take in huge amounts (40mg x 4 days) as a pulse. Dex, ah dex. It can give you an incredible energy boost and make you feel like you can tackle anything. However once the effects wear off you can get quite a rebound which is what happened at the beginning of my third cycle of chemo. I had a real dip, a horrible dip. Utterly miserable and quite a jolt. I have decided to be more careful about what I eat, my meditation practice will have to start again too. I let it slip.

On to the numbers.

Affect analysis

Mood (top image): highest of 8 (cheerful and in good spirits) and a low of 3 (sad tearful).

Looking at the percentage breakdown, I felt calm for most of the time with a similar level to last month. My feelings of being subdued were also similar with a slight drop. The big change comes in the numbers for low spirits and reasonable spirits with the former dropping from 29% to 14% and the doubling from 7 to 14%. There is also a spike in my “cheerful and in good spirits” rose from 3 to 10%. Mostly then the positive scores have risen and the negative scores dropped. You have to be careful here because some of these shifts are pretty minimal, but interesting nevertheless. The end of the month was quite grim, which doesn’t seem reflected here. It was however, a creative productive month which perhaps is.


Stoicism: a high of 7 (I feel fine) and a low of 1 (I don’t want to talk about it)

Grin and bare it at 40% is identical to last month, whereas I feel fine is up from 18% to 33%. That’s quite a leap. My stiff upper lip jutted out slightly less often this month but it didn’t wobble once. Similar to the mood numbers I’m generally coping with rises in positive responses and slight drops in the grimmer end of the index. It will be interesting to see the indexes for April as winter drags on into months which it shouldn’t trouble.


Control: a high of 6 (some control) and a low of 3 (a little control).

The index here swings between 3 and 6, predominantly showing ‘a little control’. It’s steady stuff with no spikes unlike last month with increases on the negative and a drop in the steadier areas. This goes against the grain of the previous two indexes. It’s tempting to read more into this than is the case, I will hold back from opinion until I see April’s scores.


This months hats will be skewed as many of them have gone on holiday to Istanbul for exhibition purposes. I have some duplicates though so there are some similarities to last month. The brown beenie was the predominant hat of choice, which is strange as I have no strong feelings about it. It has been cold though and it’s a good hat for the strange climate change adjusted spring we are suffering. The bucket hat and mod hat were worn roughly a quarter of the time each. Other hats might have been worn if available…..lets see what happens next month.



Bloods and discomfort analysis

A low of 2 and a high of 4 in the discomfort index. March starts just after the large light blue spike at the end of February. The pattern is relatively consistent but the dips do reflect the fact that I had a persistent eye infection (both eyes) in the latter part of the month. My bloods have all remained stable and in normal range. My immune system continued to function well. I’ve barely had a sniffle.




February round-up 2013

mood percentage Feb 2013

Into the second week of March, and I’ve only just found time to write up February’s summary; which tells us something.

We had the bone marrow and bence jones tests back. Nothing in the bone marrow, no detectable paraprotein levels and no bence jones proteins. My illness only seems detectable in the damage it’s doing to my bone structure through MRI scans.

I’ve been very, very busy at work. I was advised that it was likely that I wouldn’t be able to work through this first period of treatment but I struck lucky (mostly) with the kickback from side effects. I got tired in the afternoons but and had a bit of nausea throughout the month but that’s about it. If anything I worked too hard, took too much on, increased my workload. My inner amateur psychologist suggests this was an attempt to prove to myself and colleagues that nothing is wrong, this is possibly right but I can’t say I’ve been consciously avoiding my illness. Coping mechanisms are complex things though.

Lets look at the data:

I’ve made a decision to keep cumulative graphs of my medical data but not bother with monthly. It makes sense to ascertain long-term trends with important information like this. For the affect data, I’m going to do both monthly and long term with the monthly summaries as percentages. Here we go

Affect analysis

Mood (top image): highest of 8 (cheerful and in good spirits) and a low of 4 (low spirits).

Looking at the percentages the 4 (low spirits) swamps the highs this month by a whopping 29% compared to 3.7%. Most of the time, i.e. 37% I felt calm. I’m quite surprised at how often I did feel in ‘low spirits’; I was also subdued 18.5 % of the time. I thought I’d been coping better than that, but I suppose it’s not surprising when you’ve been told you’ve got incurable cancer. I also think that the amount of work I had on is telling, it takes me away from the creative activity of the type which makes me happy.

Stoicism: a high of 9 (illness what illness) and a low of 3 (wobbly lip)

stoicism percentages Feb 2013

The percentages breakdown are interesting compared to mood and suggest that while my feelings about things are affected, my resilience or ability to cope is good. 40% of the time I’m happy to grin and bare it, 18.5% of the time ‘I feel fine’. 26% of the time I stiffen my lip in the grand British manner. Of course all sorts of constructions can be made about this, including that I suffer a complete inability to face my plight. I prefer to think I’m good at coping and a stubborn bugger though.

Control A high of 7-8 (a good deal of) and a low of 1- 2 (no control),\ both are outliers though with only 3.57%.

Control percentages Feb 2013

The majority of the time I felt ‘some control’ at 53.57% or at least ‘a little’ at 35.7%. These figures do seem to reflect the stoicism index and I draw similar conclusions. Dips and highs reflect times when I’m more creative, overburdened with work, or as is the case here, misinterpreted a medical analysis.


Hat analysis = remarkably well distributed.

Hat percentages Feb 2013My favourite individual hat in terms of style being my Mod hat at 17.9%, followed by the bucket hat at 14.3 %. and ‘no hat’ the same. The beanie hats are cumulatively worn more than any other style, they are convenient more than anything and I wear them inside too.

What to ascertain from what I’m trademarking as the ‘pyschosartorial’ as a nod to pyschogeography? I’m surprised just how often I haven’t bothered to wear a hat at all, because my memory of this is that it was a rarer occurrence than actually the case. I’m wondering if it’s worth cross referencing the hat data to mood to see if there’s any correlation between the two in pyschosartorial terms. Something for the future. The Sindhi Topi was a recent addition so scores low on that count and is not a reflection on preference. More analysis needed here really, but something to watch out for.


Bloods and discomfort analysis

As mentioned previously, I’m only going to track medical and physical data as a cumulative charting.

My bloods (Haemoglobin, White cell count, Neutrophils) all stayed within normal parameters, so despite the hammering the chemo was giving my immune system, it was coping quite well. The discomfort index was similarly stable mostly settling along the 2 – 3 range or mild. There was an up-kick early in the month to 5 (moderate) which coincided with a misunderstanding of a medical diagnosis which put me under enormous physical and psychological stress. Again there is future scope to merge some of this data with the affect information at some point.

Discomfort cumulative Jan - Feb 2013

haemoglobin counts jan-feb

neutrophil counts jan-feb 2013

platelet counts jan-feb 2013

Weekly round-up February 17th 2013

Weekly hats week ending Feb 17th 2013

Weekly hats week ending Feb 17th 2013

This was an interesting week and the data gives a good representation of it’s peaks and troughs.

I have been in discussion to exhibit work arising from the project’s data. This made me feel full of energy and generally very creative and happy as can be seen in the highs of mood and stoicism mid-week (8 and 7 respectively). I’m not tracking creativity but if i was it would be an 8 out of 10. Ironically since my illness came back I’ve had more time to make work than before. Shame I had to develop incurable cancer to get into this position.

I have been working a lot on the project which has been great but by the end of the week I was beginning to feel tired and my back is sore, again reflected in the discomfort index which reached 4. This could be because I’ve been sitting down a lot and not getting as much exercise as I should, or it could be a symptom of the illness. I shall have to keep my eye on it.

The beginning of the week was challenging, my hair started coming out in clumps which initially was a bit of a shock (plunges in control and mood indexes). I’ve had what’s left shaved off and developed a hat index to account for the headgear I’ve adopted. I also developed a stoicism index to accompany the other mood and affect indexes.

I finished my first cycle of chemo which was a milestone and to which I have had only mild side effects, and I had an important meeting with my specialist where I got my paraprotein results which were good. No detectable levels (again reflected in higher mood, control and stoicism scores).

The scores on the doors

For the key to these please look at the Data Methods part of this site

Hats: (Beenie grey x 3, Bucket hat x 2, Blue note Mod x 1, Patterned beenie x 1)

Stoicism: a low of 4 (Stiff upper lip) and a high of 7 (I feel fine), mostly 4-5 (stiff upper lip)

Mood: a low of 5 (subdued) and a high of 8 (cheerful and in good spirits), mostly 6 (calm) and 7-8 (cheerful and in good spirits)

Control: a low of 3-4 (little control) and a high of 7 (a good deal of control), mostly 5 (some control ),

Discomfort: a low of 2 (mild) and a high of 4 (moderate). Mostly 4 (moderate)

bone_marrow_6My bloods (Haemoglobin, White cell count, Platelets, Neutrophiils) all stayed stable and in the normal range.

I had the results back from my bone marrow biopsy (image left) and Bence Jones Urine tests, no detectable levels of Paraprotein.

I consumed a total of £771.45 worth of drugs which included chemo and antibiotics.

Thank God for the NHS

Paraprotein levels February 14th

Paraprotein = 0

No detectable level after bone marrow test and bence jones urine test. Good.